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NOLA in September?

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Comments

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    1 is under 20 a day..the other about 50...bleh

  • MartyJ
    MartyJ Member Posts: 819
    edited June 2013

    Maggie - text her about the one that is under 20.  I bet she will text right back to pull it!

  • Russell1
    Russell1 Member Posts: 413
    edited June 2013

    Welcome back kathyrnla!

  • bdavis
    bdavis Member Posts: 3,192
    edited June 2013

    Marcie... I was at the PT today and she said that you used to work there.. that she was talking with you this morning... I knew you were a PT - small world.

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    I will be patient.  I was thinkimg she would take my neck and underarm drain out quickly as they were both under 5 everyday.  She said nope..I don't trust you and belted out a laugh...I was the only one in the room not laughing..now I can laugh about it  :)  guess ya can't blame her after what I have put her through.  With them both in the  same hip not sure how it works...thank god for ambien

    Maggie

  • MartyJ
    MartyJ Member Posts: 819
    edited June 2013

    Love your attitude, Maggie!

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    have terrible pain in my butt today....not sure why.  did not do that much yesterday...perhaps it is finally healing.  gonna keep a close eye on it and see how I am by the end of the day.

    Marsha...where are you darling??? we miss you

  • Audrella
    Audrella Member Posts: 153
    edited June 2013

    Maggie, I am so glad things are going well for you this time around!  I've had those clots you are referring to everytime.  They're fleshy colored and totally gross, but like betsy said nothing to be alarmed about.

    Yes, Melanie, the insurance still hasn't worked itself out yet.  Since getting the final denial, I've heard nothing.  Nothing's been resubmitted as far as I can tell, and I'm not getting a bill, so I'm really trying to just not worry about it for now.

    So, something REALLY strange and unsettling happened last night. Hubby and I both had dreams that Dr. D was having problems with his eyes.  In both of our dreams he was seeing an opthalmologist for a detached retina.  I can rationalize a lot of it because we're heading to New Orleans next week for a vacation with my SIL and her fiance and for a consult with Dr. D and we're coming up on the one year mark of my own retina detachment, but still, it's beyond strange that we would have nearly the exact same dream.

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    Audrella..wow so weird.

    Could not wait til end of day...just got done talking to doc. After the bloody clot yesterday the fluid in that drain got cloudy yellow. I woke in the night with low grade fever and awful pain in my bum. She is changing my antibiotic up...hope it is not infected. Please let me get through this with no complications! I am begging



    Maggie 2

  • ssla01
    ssla01 Member Posts: 216
    edited June 2013

    Maggie- hope you are feeling better soon.

    Sharon

  • MartyJ
    MartyJ Member Posts: 819
    edited June 2013

    Maggie Cry!

  • kathrynla
    kathrynla Member Posts: 406
    edited June 2013

    Maggie, I hope the increase in the antibiotic is all you need.  Hang in there! Kathryn

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    150ccs and counting up from 47.5 yesterday ...oddly enough the other drain is not affected and they r in the same cheeker. 4 ibuprophen and bed for this girl...wish it was dark out



    Maggie 2

  • Cherrie
    Cherrie Member Posts: 921
    edited June 2013

    Oh Maggie, you have dealt with so much. Give that antibiotic time to work. Rest and drink your water. My thoughts are with you. Sending healing thoughts and (((hugs))).

  • m1970
    m1970 Member Posts: 261
    edited June 2013

    Sorry I have been MIA. My energy has returned and its starting to get me in trouble. I was picking up sticks in my yard the other day and my stomach swelled up. I measured myself on different occasions trying to figure out what size I am and my waist swells 4 inches in diameter.



    I've had a terrible GI issue for over a year and as a result I lost 40 lbs unintentionally. However it was 40 lbs I could definitely stand to loose. However I was unable to loose weight in my breasts, so with my surgery I went from a DD to a C cup. I'm now the size I was in my 20s. Today I started cleaning out my closet. Most of my clothes don't fit anymore so I'm making room for new cute outfits. I hope chemo does not wreck my new figure.



    I'm going to start Herceptin next Wednesday, but waiting to pick up the stronger stuff on another cycle. My oncologist wants me to start next cycle but ill decide after I meet with my eye doctor. I also met with a new GI doctor who put me on an antibiotic and ran some more tests. I'm hoping he can find something that can be fixed. I know I'm being casual about starting chemo but somehow doing this a second time I just don't don't see what the big deal is waiting a month or two. We would have never even found this cancer if I wasn't doing annual MRIs.



    I scheduled my stage 2 for January 22.



    Maggie--hope you don't have to deal with the drains much longer and start healing soon. Sounds like no fun.

  • Russell1
    Russell1 Member Posts: 413
    edited June 2013

    Marsha..good to hear from you, but sorry your are going through this again! How is the eye?

    Mags...geez this has to go away!!! Sending healing thoughts!

  • Russell1
    Russell1 Member Posts: 413
    edited June 2013

    Audrella..that is a weird that both of you had the same dream! I know insurance will come through for you. I just know it! Hugs!

  • mstrouble16
    mstrouble16 Member Posts: 177
    edited June 2013

    Well have an appointment on the 17th with Dr. D to see if there will be a Stage 2b in my future. Have a couple of areas on the right that have necrosis and is causing indentations. So we'll see.

  • Barbmal5
    Barbmal5 Member Posts: 76
    edited June 2013

    Good morning all.



    Maggie I am putting in extra prayers for you. So glad to hear your friend with the baby is doing better than initially thought. Still breaks my heart.



    Glad you seem so much stronger & positive now Marsha. Hoping things keep going in this direction for you.



    Chellehump, how're things with the cording & overall healing?



    Klanders, are you able to stand up/lay down straight?



    Sorry for all the small talk but I've missed you guys.

    I still have one stinking hip drain left. Still over 20cc's within 24 hr period so not going anywhere yet. Right nipple still bleeding off & on. Tough since its laying in that divot & rubs on everything no matter how i try to pad it. Waiting for necrotic spots to peel off.

    I shouldn't complain, one drain & a bleeding nipple is so minor after reading what so many others are dealing with. I should just shush up & deal with it.

    Just bought my airline tickets for NOLA for stage 2 with Dr D in August so anyone seeing him before me better give him a vision screen and let me know!! You can do it on the sly so he doesn't suspect. Just have him read something weird or show him a funny pic & see if he catches it! He'll never know what we're up too, heehee.



    Hope everyone has a great day.



  • chellehump
    chellehump Member Posts: 374
    edited June 2013

    Hey there everyone, I've been away for a little bit, but read through most of the pages.

    Hey Barb :) Thanks for asking!!! I did a few sessions of PT and have stuff to do at home, but nothing helps or makes a difference. I actually spoke with the therapist on the phone yesterday and she is good with helping me after surgery. I just have to get the doctors to say what/when (any restrictions on what can and can't be done) but the problem is the order has to come from a Georgia doctor by Georgia law. I am hoping Jeanine or someone will speak with my primary care doctor and tell them what to put on the order. Betsy, I remember you saying your PT said therapy can start as soon as the drains come out and close? If you could let me know what techniques yours uses, that would be great. Obviously some massage therapy and she mentioned ultrasound and stretching, but was curious what yours does.

    Barb, you have every right to complain as we all know those hip drains suck!!! You sound like you are doing well though overall :) HUGS!!

    Mags, sending up extra prayers for you!! How are you feeling today?

    It's great to hear from you Marsha!!

    I think and pray for all of you everyday!!! All of you were so supportive and helpful as I went through the process. I have to admit I am kinda of nervous about this upcoming surgery in 7 weeks. I am so scared that this is just how my body is going to react to trauma and I'm making things worse by trying to correct it....UGH!! But, I can't sit on anything for any length of time without pain and my hips are super sensitive!!!! I wear dresses just about everyday cause it's uncomfortable to have pants rub on my hips/high butt area. Sorry, just feeling a bit overwhelmed today and just looking for the days that I can move on pain free and maybe have an added bonus "hopefully" of decent looking scars across my backside :)

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    today is a new day..fee;ing a bit better.  fever gone just wiped out.  new antibiotic levofloxacin.  red spot just above incision on mt butt.  sent pics today and she thinks the new med will fix me

    chelle....breathe...breathe...it is going to be ok and you are going to do great and be pain free by the end of summer.  Just have faith in the doc...they are wonderful

    My PT is going great...arm tissue is softening as well as the left flap.  no cording either.  Enjoying the daily mld just not the wrapping...will be worth it in the end

    maggie 2

  • ssla01
    ssla01 Member Posts: 216
    edited June 2013

    Maggie, I'm so glad to hear that you are better!

  • bdavis
    bdavis Member Posts: 3,192
    edited June 2013

    Chelle... Do relax... Please.

    My PT spends an hour with me... she deep massages my scar across the backside (it stretches just above the crack) and this is where I had cellulitis, and apparently had adhesions. My scar is SOOO much better. In addition, she massages my trunk (front and back) for lymphatic flow, and also my left arm (side of node removal) and left shoulder/underarm/lat area where I had the tdap flap.

  • Catie2013
    Catie2013 Member Posts: 241
    edited June 2013

    Bdavis - that is your PT who is doing the massaging, right? Has anyone said anything about going for a massage with just a massaage therapist (not especially trained in lymph stuff?)



    I'm asking because the hospital close to me in Atlanta has a Wellness Program for Cancer Survivors/Patients and has free massages - if you can get in! I went before my SGAP and then after and before my PAP. The massuese said that I should NOT get normal massages because of my lymphectomy on right side years ago and SNB on left side last year. She said they could screw up (my term not hers) my lymph system and may even cause some LE. I've not heard anyone say that and wondered if you have?



    Thanks much, glad it's working for you.

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    catie...my understanding is that regular massage can trigger LE.  I did not understand this risk and went to mexico last year and got a lovely hot stone massage with a side of LE..full blown in my high risk arm.  MLD (manual lymph drainage) is not really massage per say...it is a type of skin stretching that encourages lymph flow and should be done by a trained LE therapist or once you know how for yourself.  It sounds like a great idea to offer but really would talk to an LE therapist before getting one done.  It sucks because I always enjoyed a great massage and warm baths--also an LE activator.  check out www.stepup-speakout.org for some great le answers and a list of certified therapists.

    feeling better today and pain in going away!  could not even stand without wanting to hit the floor..hooray for pain killers and good antibiotics. 

    still wondering BDAVIS if mine may have been cellulitis too??  red above the incision and painful to touch etc. Who knew you could get it in the backside like that sheesh!  Sounds like your therapist is wonderful too!!  Just love mine and she sees me right now everyday.  Lots of "popping" going on that may be the new lymph flap activating...so exciting!

    Maggie 2

  • bdavis
    bdavis Member Posts: 3,192
    edited June 2013

    Maggie... when I read your post initially I  also wondered if its cellulitis... You may never know, but sounds like it was and you got on antibiotics before it progressed. With mine, I felt like I had the flu and my back hurt. I now have a filled antibiotic ready, just in case.

    Catie... yes, its my PT. My opinion is anyone could massage scars to encourage them to break up, and probably anybody could give a back massage. But if you have signs of LE and they push fluid the wrong way, it could swell up. I do think that any massage is good though if you don't have LE issues. The more you push things around, the more you will encourage new pathways. LE massages though gently knead the skin encouraging flow in a certain direction. and they know where your pathways are and should be. So bottom line, if you have LE only see a specialist, but if no LE and just want scars (adhesions) broken up and to encourage stimulation I think a regular masseuse is ok.

  • klanders
    klanders Member Posts: 152
    edited June 2013

    Thanks for asking Barb. I'm 6 weeks out and I'm probably about 95% upright. I can't lie flat yet but I do okay if I put a few pillows under my head. My mom pulled the last of my drains about 1 1/2 weeks ago. Dr. S Is different than Dr. D or M with compression. I was told no compression until the last drain was removed and then to wear it 24/7 for 1 week. Based on what I've heard here I'm continuing to wear it after that 1 week and will do so as long as I can tolerate it. I'm just using what they gave me at NOLA - a black thing that goes from my knees almost up to my waist and with zippers. It fits well under my clothes.



    I survived my DD's graduation, open house, and parent orientation at her university, only to pick up a nasty virus that is getting the best of me. The head pain has been really bad, particularly when I've had the fever part. I'm so tired of not feeling well but my doc said this particular bug could get the best of me for about 2 weeks. I've been out of commission for 6 months now (had hysterectomy and shoulder surgery in early December before learning about the cancer) and my DH is running out of steam trying to work full time and be "me" too. Somehow I need to get out of my recliner today and figure out an easy meal to make the family for dinner. And I have 6 months of clutter to contend with. This to shall pass. Just tired of pain.



    I've been doing PT. All she's done so far is gentle massage and working on my cording in shoulders/under arm/breast area. Working on ROM - my left shoulder was frozen before the BMX.



    I haven't had time or energy to research/figure out my next step but I need to do that soon. Doc is recommending 5+ years of tamoxifen and I'm not sure I want to do it.



    Well, that's me at the moment. I'm scheduled for stage 2 on September 5th at NOLA. I was originally going to do it early August but decided that it is more important for me to have a "normal" summer with my family, particularly with my DD heading off to college.

  • Cherrie
    Cherrie Member Posts: 921
    edited June 2013

    I know what you mean Klanders. I am taking the summer off. My next stage two is Sept. 19. Hoping this is my last one. Our summers here in Michigan are short, but sweet.

  • Catie2013
    Catie2013 Member Posts: 241
    edited June 2013

    Sweet for sure, Cherrie, we lived in Chicago but went blueberry picking in Michigan - yummy!



    Klanders hoping you enjoy your summer!

  • Russell1
    Russell1 Member Posts: 413
    edited June 2013

    Good to hear from you Chelle...you are going to have smooth scars :)

    Mags..so glad you are feeling better!!!

    Klanders..you sound great..I wish I was as patient as you with Stage 2. I want it done. Hoping I'm doing the right thing.

    Question, Is it possilbe to have cording and not lymphadema? My left side where lymph nodes were removed, feels like a rubberband goes all the way to my hand. When I stretch it everyday it feels better. I also have pain when I touch the cord. I don't have any swelling. Thinking I should get PT. Also, my left radiated breast is firmer. I have a flap from my butt there. Will they be able to soften this up in Stage 2? I went bra shopping at Victoria Secret yesterday and was measured a 32DDD. That is hilarious!!! Victoria Secrets sizing is crazy! I don't look that big! More like a c cup!!! I told the gal I was having more surgery and half a cup size would be added and she assurred me that the bra would still fit. I bought a 34d racerback bra that I so needed because I wear so many tank tops racer back style. I would be upset if they don't fit after surgery. They are way overpriced!! I had a giftcard from hubby from xmas for 150.00 and the card reads "For your new boobies" So cute!!! Even with the gift card, it was hard for me to fork it over with the 45.00 and 52.00 price tag. I am a target shopper:) Don't get me wrong, I love nice things, but I like to mix cheap and expensive. I like nice shoes and purses, but will mix cheap clothes with them!! lol I'm so off topic right now. I was just thinking if I was rich, I would take all of us on a vacation together. I would have PT's on hand for daily massage and whatever else anyone wanted or needed. Thinking about what we go through....I just want to make life easier for us:) Hugs everyone!!!

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